Sneezy, Coughy, Phlegmy, Stuffy, Achy. No-Sleepy and Post-Nasal Drippy; and no Doc, which is possibly what led to this column being written.
For one box of 54 petite Belgian waffle cookies in three delicious flavors: milk chocolate, dark chocolate and vanilla; an extravagance to be sure, available during the holidays; this recipient (actually, my wife, Dina, was the recipient) very happy to oblige and indulge.
Thankfully (so far as I know, which isn’t very far), after a five-week interval between infusions, which included two additional weeks of pre-chemotherapy lab work and an out-of-the-ordinary 24-hour urine collection (“creatinine clearance”) to boot – to more accurately measure my kidney function in hopes of meeting a 1.6 threshold – muster was finally passed, and I was subsequently infused without any further adieu.
If I wanted to rationalize the benefit of delaying my heretofore every-three-week chemotherapy infusion from three weeks to four and now on to five, possibly six – and that’s dependent on improved results from a second/maybe even third retest upcoming (this retest a bit more involved than drawing blood) – I would say it’s only fitting that I should have a break/brake; after all, it is the holiday season when all good things; yada, yada, yada. If only it were that simple.
Loosey goosey, I suppose. As much as one might prefer some predictability in their life (certainly a cancer patient would – I know I would), I may be entering a cycle of permanent unpredictability.
This is not a home improvement reference, but this is most definitely a do-it-yourself column.
If I’ve heard it once – from my oncologist – I’ve probably heard it a dozen times over the last nearly-six years.
Apparently, at least in the near term, we’re (meaning my oncologist) not going to fix it. And by fix it, I am referring to my chemotherapy infusion, which will continue to be every three weeks, as it has been for almost six years; save for a year or so when I was able to take pills at home, and on-site infusions were not necessary.
Not exactly “like a frightened turtle” as “similed” on a long-ago Seinfeld episode by Jerry himself; this shrinkage is the good kind, the kind you hope a radiological oncologist characterizes when viewing your CT Scan (computed tomography).
Not exactly “like a frightened turtle” as “similed” on a long-ago Seinfeld episode by Jerry himself; this shrinkage is the good kind, the kind you hope a radiological oncologist characterizes when viewing your CT Scan (computed tomography). Specifically, the exact kind of scan I get every three months to assess and evaluate the tumors, and fluid, in my stage IV, non-small cell cancer-affected lungs.
Unknown at this date – Saturday, November 15. In fact, it will be six days from now until we’ll know the results. As it is always scheduled, a week or so after my quarterly CT Scan, we will have our usual follow-up, face-to-face appointment with my oncologist.
Early on during my indoctrination/assimilation into the cancer-patient world in which I now reside, I remember asking a fellow cancer patient/friend if I could use cancer as an excuse for whatever it was needed excusing (directly or indirectly related), and she said: absolutely, “blame the cancer.”
Instinctively, I am not the most open-to-new-ideas/new-things kind of person. However, an unexpected diagnosis of stage IV, non small-cell lung cancer (NSCLC) at age 54 and a half – along with its equally unexpected “13-month to two-year prognosis,” changes a few things.
Not that I’m the least bit worried (actually, I’m the most bit worried), but surviving a terminal cancer diagnosis years beyond one’s original prognosis does present its own unique set of problems.
After re-reading last week’s column: “Not in the Mood,” I began wondering if that column had strayed beyond the boundaries, so to speak, and was too much about me and not enough about my circumstances.
Sometimes, believe it or not, I’m not in the mood to be a terminal cancer patient (duh). Not that the effect is particularly tangible, but the weight of it, as well as the associated waits I’ve occasionally written about, can get awfully heavy.
This column completes the three-week arc which describes what I have endured mostly successfully for approximately five years now: chemotherapy every three weeks – with one year off for good behavior (not really good behavior; the year off was to switch to a twice-daily pill, Tarceva, to be taken at home, since the previous treatment was no longer stemming the tide). It’s been my experience that these anti-cancer drugs don’t exactly work forever.
I realize, given last week’s column: “Post-Chemo Week,” this week’s column about the preceding week (week-of, actually) of chemotherapy might be a bit bass-ackward, but it seemed reasonable to me that if you regular readers had an interest in the week-after, perhaps you’d have a similar interest in the week-before.
For the past year, every three weeks I have been infused with a chemotherapy drug called Alimta, “the last miracle drug,” to quote my oncologist, and a drug with which I hadn’t previously been infused.
And so it goes, every three months or so; a CT Scan, a week or so of waiting, and then a face-to-face appointment with my oncologist to learn/discuss the results. Thankfully, the results continue to be amazing. My doctor has told me that I’m his third miracle; stage IV, non-small cell lung cancer patients generally don’t live beyond two years. I’m in year six.
At present, July 12th, I’m halfway, approximately, between my last CT Scan which showed a previously unseen silver-dollar sized growth in my lower left lung and my next CT Scan scheduled for August 6th, one month earlier than my usual three-month interval in order to make an evaluation sooner rather than later; to determine if this is new growth or nothing more than old growth that is now visible due to the combination of shrinking tumors and dissipating fluid opening up the viewing area, so to speak. Apparently, the chemotherapy drug, Alimta, with which I’ve been infused every three weeks since last September appears to be doing its hoped-for job: shrinkage.
“Just when I thought I was out…they pull me back in.” Although this quote is from Michael Corleone from “The Godfather: Part III,” it very much characterizes my daily struggle being a terminal cancer patient; non small cell lung cancer, NSCLC, is like that, almost always. Even though I don’t want to think about the fact that I have cancer, or not let it affect my judgment on life – or perspective; or let it impede my path to a happier existence, more often than not, it does.
I think I know what a rampaging bull feels like; and I don’t mean one on Wall Street, either. I mean one in the figurative sense: when one has a need, an overwhelming, unstoppable-type urge, to scratch that itch, to gratify that which has been delayed. What am I talking about? (You sound like my wife, Dina.) I am talking about food. More specifically, I am talking about a side effect I’ve been experiencing of late from the chemotherapy drug Alimta, with which I’ve been infused every three weeks since late September, 2013 (successfully I may add, given the shrinkage noted in my most recent CT Scan).
Forrest Gump knew when he voiced over: "Mama got the cancer and died on a Tuesday. I bought her a new hat with little flowers on it. And that’s all I have to say about that." And if you watched the movie as often as I did (it was one of my mother’s favorites), you may also recall "Mama always said you got to put the past behind you before you can move on."
Growing up in the 60s, if you loved sports, as I did/still do, you spent hours listening to games on a transistor radio. There certainly wasn’t “Cable” television back then; heck, there wasn’t even color television, let alone “HD,” “interactive,” or whatever else television technology has evolved into. And of course, there were no “big screen” television sets either. We had a 19" Zenith black and white television and we received three channels: 4, 5 and 7 (in Boston), and as much as sports was/is important in Boston/New England, viewing options, given the limited VHF/UHF band frequencies, meant listening to games on radio – AM radio. Games were regularly televised on weekends, more so if the home team was playing on the road. As the decades have passed, so too have transistor radios, black and white televisions and limited viewing on only three channels. Between “Cable,” computers, and more recently, the introduction of hand-held devices, access to and familiarity with sports has grown exponentially. Add in the explosion of sports-talk radio and the abundance of sports-themed content on television (regardless of whether the games are at home or on the road) and one could be in his “man cave” for hours on end “channeling” his – or her – passion, for any team, in any city, at almost any time.
And therein lies the anxiety. Although, all things considered – and as you regular readers know, I like, maybe even need, to consider all things – the medical assessment of the most recent CT scan of my upper torso and thorax/lungs showed a new object in my left lung, “approximately the size of a silver dollar,” according to my oncologist. What this object is, exactly, cannot be determined at this juncture; technology prevents such clarity, unfortunately. Nevertheless, its appearance and location are possibly cause for concern, possibly not.
In anticipation of my next face-to-face appointment with my oncologist, the first in three months (as per usual) and considering a breathing issue I’ve been experiencing the last month or so, my wife, Dina (original Team Lourie member) asked if I wanted my brother, Richard (the other original Team Lourie member), to attend. Not that he wouldn’t attend if asked (he’s local); it’s more that I’m wondering if he really needs to attend, as in whether there will be life-changing, cancer-related decisions where all hands need be on deck. Of course, a week before the appointment I have no legitimate clue – nor have I received any suggestions from my oncologist – that anything of substance/recent changes that have occurred (I have also recently completed my quarterly diagnostic scans and am awaiting those results as well) will be discussed; and that’s the point of this column: how frequently, how/when does the patient/survivor know when team members should be present at these appointments?
Just as “everyone knows Geico can save you 15 percent in 15 minutes,” that is, if you watch television, listen to radio, access the Internet or even sit on the beach at Ocean City and watch the single-engine planes flying by pulling banners; so too do people know that when your primary care physician tells you that you need to meet with an oncologist to discuss your recent medical results, you should bring along family, friends, advocates, doctors, lawyers, etc. (your presumptive “team”), because, well, you know why: your life may depend on it.
Since I’m in the honesty business (as you regular readers know; and based on many of the e-mails I receive, commended on being so), if I were to admit anything concerning my behavior during these last five-plus years as a lung cancer survivor, it would have to be my continual tendency to minimize new symptoms, and in turn, not contact my oncologist (which from the very beginning is the exact opposite of what we are told to do). Stupid, stubborn, scared, naive, in denial; you pick.
Although one never knows, especially if that one is living in "cancerville." And by "cancerville" I mean, euphemistically speaking, anywhere where one of us diagnosed with cancer is living. Living being the operative word. Still, as my column from a few weeks ago entitled, "Dying With Curiosity" discussed, cancer patients are often besieged by their subconscious, changing fact into fiction and manipulating feelings into inevitabilities. If only there was a switch to turn off the mind games that don’t exactly mind their "man-ners" or "women-ers" for that fact, I’d flick it in a second. Cancer creates physical problems – as we all know, but I have to tell you, it’s the mental problems that can be just as deadly.
It is not the best of times, nor is it the worst of times; it is, simply put: the time between the end of winter and the beginning of summer. It is the season known as spring, but more to the point of this column, it is the time when, if the weather cooperates/accommodates, I won’t need to turn the heat or the air conditioning on in my house. I will instead be able to ride the wave, so to speak, and not incur any post-winter/pre-summer utility bills. Possibly, I might even be able to pay off my oil-heating budget bill balance for the 2013/2014 season – before the 2014/2015 budget cycle begins, and hopefully not have to cool down the house at the same time – due to an early summer – so that on the day my oil-heating bill is due, it won’t be competing for cash with my upstart electric/air conditioning bill for money not well spent and for money hardly in abundance.
As a born, bread and buttered Bostonian (Newton Centre, a suburb, to be specific), one of my enduring and genetic passions has been to live and die (figuratively speaking; this is not a cancer column) for The Boston Red Sox. My father sold concessions at Fenway Park (the stadium home of the Bosox since 1912), during the Depression when he was a little boy (not yet an adolescent even). He was nicknamed "Beezo," (his given name was Benet, although he was always called Barry) so he could gain full acceptance to a local knothole gang. Named after the wooden planks which surrounded the old Braves Field in Boston (a National League team called Boston its home as well back in the day), the kids ("gangs") would stand and peer through the knotholes in the wooden planks which otherwise blocked their view. It was a privilege and an honor for my father to be so connected to the game this way. He grew up loving baseball, and as a parent, he passed his love of the game on to me – and my brother.
"I’m sitting in the rocking chair, good buddy," (a "Smokey and The Bandit" reference, if you’re not of a certain vintage), between two 18-wheelers where the police radar can’t find me – further referencing the C.B. radio days. Updating to the "Kenny-with-cancer" days, I’m a month or so past my last very encouraging CT Scan, the one I wrote about when my oncologist offered me a congratulatory handshake, a gesture he had not made in the five-plus years since we’ve been tangling with this damn disease; and I’m approximately seven weeks away from my next CT scan, "intervaled" every three months at present. Seven weeks is far enough away where I’m not even thinking about it, or the possibility of its discouraging results that I’ll know about on or about June 9th. I am cruising, emotionally, and savoring the excellent results from the last scan and not yet worrying, wondering, hoping, praying (too much) about my next scan. This means, at the moment – or moments, I should say, I am enjoying a relatively stress-free and blissful ignorance to what may – or hopefully may not, be happening in my lungs. I am, to quote a Three Stooges line: "as safe as in my mother’s arms."
So has said my longtime oncology nurse, Ron, who has tended to me since June, 2009. Originally, I had been assigned to a different oncology nurse, Holly, with whom I developed an immediate rapport. She cared for me from the beginning, early March 2009, when I began my every-three-week chemotherapy infusion through June, when she transferred from the Infusion Center to a different unit (oncology does take a toll). Initially, after Holly’s departure, Jane, another nurse in the unit, took me on as a patient. However, and this is where the details get sketchy, within a subsequent infusion or two, I was told one day upon my arrival at the Infusion Center, that Ron, still another oncology nurse, who I had certainly seen there previously but with whom I had minimal interaction, would be taking over for Jane – who was not transferring out – and henceforth would be my new oncology nurse. Apparently, I had been traded. For another patient? For future considerations? For a lunch-to-be-paid later? To this day, nearly five years later, I’ve never been able to uncover the truth. I got along fine with Jane; I’m a very low-maintenance patient/ person; I don’t think I did anything to precipitate such a decision. Nevertheless, a deal (my word) had been struck.
…my Certified Holistic Health Coach, Rebecca Nenner, that is. (Visit www.healthcoachdiva.com for information leading to a healthier lifestyle.) More than a coach, Rebecca is my friend – and has been for many years. A former co-worker at the Connection Newspapers, Rebecca is as passionate about health and fitness as I am about the Boston Red Sox. She has been my guiding hand now for over five years, most especially when I was first diagnosed with stage IV lung cancer back in February, 2009. Although there are no whistles involved in her coaching, there are phone calls, e-mails, YouTube videos, Webinars and miscellaneous other advisories regularly landing in my in box. To say Rebecca has saved my life might be an overstatement, given that I am being treated by an oncologist; however, she has given me an alternate perspective on what I can do to help my body survive my treatment and live like I have a present and a future, a gift if ever there was one.
I felt a bit of a dope this week when, after reading last week’s column, "Whew!", multiple friends called to inquire specifically as to the "Tony-the-Tiger Great" news I wrote that I received from my oncologist, and I couldn’t answer them in any detail: shrinkage, less fluid, "partial stable remission"? Nothing. And though I tried to get my oncologist to explain to me exactly what was so encouraging about this most recent CT Scan – compared to the one I took three months ago (as opposed to the one I had nine months ago which was mistakenly compared to this most recent scan and resulted in the "Some better, some worse. I’ll explain more on Friday" e-mail I received from my doctor and talked about in "Whew!") – I was rebuffed. Rebuffed in the best possible way: being told instead how great I was doing, how great my lab results were (for this most recent pre-chemotherapy) and how I could live a long time like this (presumably continuing to be infused with Alimta) – it was almost disconcerting; especially when you consider the original e-mail assessment we received and our less-than-positive interpretation of it. Moreover, the oncologist’s exuberance and smiling countenance, along with his offer of a congratulatory handshake led me away from the missing facts and immediately into these new-found feelings.
Originally, this column was to be a discussion about the communication process between my doctor and this patient. Specifically, the time lag between when tests are performed/completed and when those results are communicated to the doctor who in turn – per this patient’s request, e-mails them to me. In the olden days, results were most likely offered up in person; in the post-olden days, more likely a phone call was made; presently, at least in my experience, results most likely will be e-mailed. I imagine an enduring problem for the patient – during all three "days," has been the time waiting for test results and hearing about them from your doctor. Excruciating is one of the most accurate characterizations of that delay, combined with an unhealthy dose of helplessness. Eventually, if you live long enough, you sort of become accustomed to the process and learn to roll with the punches, both figuratively and literally. Nevertheless, the patience and experience you learn can’t totally stop the rampant speculation that keeps you up at night and sleepy during the day.
While we’re exchanging pleasantries here, in semi real time – although this column will not be most read until March 6th (I need to submit it on Monday, March 3rd as we go to press on Tuesday, March 5th), I feel the obligation, given how last week’s column ended, to update you on the results from my February 26th CT Scan. Presumably, by the title you all have determined that as of this writing, Saturday, March 1st, I have not heard back from my oncologist. Typically, I would have already heard from him, electronically. But so far, not a peep, electronic or otherwise and believe me, I’ve been checking, as you might imagine.
I made it. It’s five years after receiving a terminal diagnosis on February 27, 2009 from my oncologist: stage IV non-small cell lung cancer, accompanied by a "13-month to two-year" prognosis. Let’s be honest, medical professionals don’t toss around the word "terminal" because you’re going to be treated at an airport. Presumably, they know their facts and figures as well as the patient’s present condition, confirmed by a variety of diagnostic results from X-Rays, CT Scans, P.E.T. Scans, lab work and of course the ever-popular biopsy, so their diagnosis/prognosis is a bit more than an educated guess. Nevertheless, there are exceptions to every rule and until proven otherwise, I was not about to succumb to their statistics. Still, based on the best medical knowledge available at the time, this patient (yours truly) was given a limited life expectancy and encouraged to take the vacation I had always dreamed of – for obvious you’re-life-is-now-shorter-than-you-ever-imagined-type reasons, and yet, five years hence, here I am.
Not to state the obvious (which I readily admit I do), but to be given a terminal diagnosis: stage IV, non-small cell lung cancer, along with a rather disappointing prognosis: "13 months to two years" is a challenging set of extremely unexpected (given my immediate family’s medical history) circumstances. I don’t want to say that I live under a dark cloud – because I don’t like the negative implication or reaction it conjures, but I definitely feel as if I have a metaphorical sword of Damocles hanging over my head; which I only refer to as an-out-of-context Three Stooges reference wherein a non-Stooge was innocently standing under a pie which Moe had thrown to the ceiling and there it stuck, hanging precariously over the character’s head. Now I still don’t know the proper historical context of the sword of Damocles, I only know the Three Stooges version, but there was some imminent danger involved (not death, mind you), but rather a falling pie which ultimately landed flush on the character’s face as she looked up to make further inquiries. Nevertheless, pie issues/references notwithstanding, having seen my oncologist today while being infused and receiving a big smile/ "you’re going great"/thumbs-up set of gestures/reactions while reclining in my Barcalounger with a chemotherapy I.V. dripping medicine into my right arm, is the kind of super-positive feedback with which I can live. Along with my every-three-week pre-chemotherapy lab work and my every-three-month CT Scan followed by my every-three-month face-to-face appointment with my oncologist, this is how I roll. Worrying about upcoming tests, waiting anxiously for results, trying not to anticipate good, bad or indifferent; living day to day and trying to appreciate my good fortune and the unexpected above-average quality of life with which I’ve been blessed – for a terminal cancer patient, that is.
Not that I minded it in the least (in fact, I appreciated it in the most), but I received my first senior discount the other day. I was fast-fooding at my local Roy Rogers restaurant when the unexpected kindness occurred. Considering that I’m not at the age yet when such discounts are typically available, I certainly did not (do not) presume that my appearance somehow reflects an age which I am not. In truth, I don’t believe it does. So even though I didn’t ask for the age-related discount, I was offered/given it nonetheless. As the cashier tallied my bill, she then spoke the price and adjusted it downward 10 percent for my surprise "senior" discount. On hearing the lower price and the reason for it, I immediately responded: "Oh, you’re giving senior discounts to people over 40?" To which she replied, while looking me directly in the eye: "No. Over 30." Laughing at her quick-thinking quip, I thanked her again for the discount and commended her on her excellent answer/customer service.
Today I was eating a Tootsie Roll, and while chewing it, felt something sharp against my gum. Knowing my candy, sharp I should not feel, so immediately I stopped chewing in hopes of locating the sensation; which I did. It turns out that I broke off the top half of a previously (years ago) installed dental crown. Fortunately, the crown was still in my mouth, so I was able to retrieve it. Upon closer examination of it and the now crown-less tooth, it appears that the crown and the tooth are completely intact (undamaged) and perhaps a simple re-cementing at the dentist’s office awaits, a repair achieved much less expensively than replacing the entire crown. (I can hope, can’t I? After all, I am a cancer patient; hope is what I do.)
Since March 6, 2009, nearly five years now, save for nine months when I was taking an oral chemotherapy medication at home, every three weeks I have been infused with some sort of chemotherapy drug. In that time, I have certainly become familiar and fairly well-known to the various staff at The Infusion Center. What follows is the most recent exchange with the receptionist in Oncology, as best as I can recall it.
Since it had been more than a few months, today I summoned up the courage to Google my long-time friend and fellow stage IV lung cancer survivor, Suzanne. Suzanne and I had been years out of touch (for no real reason other than initiative and the geographic consideration that she lived in Barnstable, Ma. and I live in Burtonsville, Md.) and recently back in touch – due to our identical cancer diagnoses. I learned that she had succumbed to her disease back in October, 2013. We last had contact electronically back in the summer. She was extremely weak then, she said, too weak to talk, so e-mailing was best. In that e-mail, ultimately her last, she wrote that the most recent chemotherapy drug with which she was infused was no longer effective and that her oncologist had no other drugs left to recommend. Not that she said it in so many words, but at that point her prognosis was grim. She offered that her two boys were with her and from them she would gain great comfort. The news was very unsettling to me and I was afraid that this e-mail might be our last – and so it was.
I don’t mind being alive, really I don’t. Occasionally though, I receive well-intended inquiries – electronic and otherwise, from people (who know my cancer story) who are sort of wondering if perhaps I’m not. When people haven’t heard from me in a while – and this is a category of people with whom I don’t have regular/recurring interactions, but rather a group of people who reach out and attempt to touch me (figuratively speaking) every three or four months or so – there is a presumption on their part that my silence (so far as they know) is not in fact golden, but rather ominous, as in the cancer might have won and yours truly didn’t. And when I respond, their pleasure/relief at my not having succumbed to the disease is quite positive, generally speaking. Their honesty and joy in learning that I’m still alive is both rewarding and gratifying. Rewarding in that they care and gratifying in that I must be doing something right which enables me to sustain myself through a very difficult set of medical circumstances: stage IV, non-small cell lung cancer, the terminal kind (is there any other kind?).
On multiple occasions throughout my nearly five years of being treated for stage IV, non-small cell lung cancer, my oncologist has given me opportunities to stop and/or take a break from my treatment, or to consider alternatives to the normal protocols – for the expressed (literally) purpose of sustaining/enhancing the unexpected, above-average quality of life I have mostly experienced during my nearly non-stop, every three-week chemotherapy infusions which began in early March, 2009. The goal being to enable me to enjoy my life and not be subjected to/beaten down by the ravaging and debilitating effects of chemotherapy.
So much of what I feel as a cancer survivor comes from the feedback I receive from others. Positive, complimentary, flattering characterizations are crucial to my optimistic outlook. Negative descriptions, reactions, etc., are not. Not to discount honesty, but the emotional divide on which a cancer patient’s self-assessment/attitude teeters is delicate indeed and honesty is sometimes (I said "sometimes") not the best policy. If I’m in the right mood, negativity can be deflected, absorbed even; not a problem. If I’m in the wrong mood, however, the negative can push me into a black hole of emotional despair. Regardless of whether the comment/observation is well-intended, accurate or even prudent under the circumstances, its effect can be deeply felt. Getting back to normal is not impossible and mostly within my control, but if it’s all the same to you, I’d rather not have to claw my way out.
Considering that I’ve been cancer-centric now for nearly five years, one would have thought I might have learned and totally embraced an alternative concept: forward living – and less thinking about past causes and their possible current effects. Certainly cancer causes physical manifestations and symptoms that are diagnosable and indicative of trouble. But it’s the unseen effects that in some cases cause as many difficulties. What I am referring to is the mental and emotional toll a terminal diagnosis and short term prognosis can have on the patient’s perspective on life and living, and what’s presumptively thought to be left of it.
Since you asked, or rather indulged me the past few weeks by wading through my two "Scanticipation" columns anticipating a result, I am happy to finally share that result with you: "Stable and better." These are the exact words e-mailed to me by my oncologist in response to my post-Thanksgiving inquiry about my CT Scan completed on the 27th.
When I get CT-Scanned on Wednesday, November 27th, it will be nearly four months since my last diagnostic scan. That occurred during my hospital "staycation" during the first week of August, when I was admitted due to the extremely abnormal fluid buildup in my left lung.